OCF Conference this Friday

[EAMom]

Buster......I am curious....you said Murphy stood by "only antibiotics" to treat PANDAS.....can you explain her reasoning???

 

I don't want to speak for Buster (couldn't come close if I tried).

But I think it was Dr Nicolaides who stood by the "antibiotics only" treatment. Dr Murphy was at the conference, but she wasn't part of the PANDAS track. If he's referring to the doctor who co-presented with Beth Maloney, that was Dr Nicolaides. She didn't speak against IVIg or pex per se, but stated the abx only was her protocol. I presume because she has had positive experiences with this. I can speculate that because she's a developmental pediatrician, she doesn't have experience with the other treatments. But she was present for both Dr L's and Dr K's presentations and perhaps now has some food for thought. She was the only doctor who said that she needed an above normal ASO or anti-D Nase B titer to consider a Pandas dx (she felt anti-D Nase B was more reliable). The other doctors didn't feel this was a requirement and that the sum of other clinical symptoms would be persuasive. They also felt other infections besides strep could trigger subsequent episodes, so they didn't spend much if any time discussing titers, since they often see kids after they've been sick a long time and they probably aren't seeing the child's first episode.

 

It's also possible Buster attended Dr Murphy's presentation or spoke with her. So I will wait for him to chime in.

 

Did Dr. N. say how many PANDAS patients she's treated with this protocol? And does she follow them long term? (or do they eventually end up running off to Dr. K. after initial but temporary sucess with antibiotics-only?)

 

I think Sammy got "lucky" in that he didn't "get" PANDAS until 11 (that may have been his first episode--maybe there is a difference in these kids that get PANDAS later in childhood)...and then went through puberty during the 3 years he was on abs.

 

I also wonder if with Dr. N.'s "diagnostic criteria" if she gets more of the "clear-cut" acute onset cases with eleveated titers...if that is the exact group that will be more responsive to abs (vs. needed IVIG). Whereas, perhaps Dr. K. gets more patients (perhaps more chronic) from all over the map, many of whom have already "been there"/"done that" with antibiotics-only.

Edited July 20, 2010 by EAMom

[peglem]

Did Dr. N. say how many PANDAS patients she's treated with this protocol? And does she follow them long term? (or do they eventually end up running off to Dr. K. after initial but temporary sucess with antibiotics-only?)

 

I think Sammy got "lucky" in that he didn't "get" PANDAS until 11 (that may have been his first episode--maybe there is a difference in these kids that get PANDAS later in childhood)...and then went through puberty during the 3 years he was on abs.

 

I also wonder if with Dr. N.'s "diagnostic criteria" if she gets more of the "clear-cut" acute onset cases with eleveated titers...if that is the exact group that will be more responsive to abs (vs. needed IVIG). Whereas, perhaps Dr. K. gets more patients (perhaps more chronic) from all over the map, many of whom have already "been there"/"done that" with antibiotics-only.

 

This post has been edited by EAMom: Today, 10:08 PM

 

Good points! I wonder where Dr.N got the raised titers criteria? I know this was mentioned in Swedo's study participation criteria, but wasn't an either +swab or titer evidence?

 

I also wonder if Dr.N "rules out" PANDAS based on negative titers, making some patients believe they do not have PANDAS, when they actually do.

[Buster]

just from my impressions on this . . . i believe it was in Dr. Leckman's talk that Dr. Murphy was in the audience for. he seemed to have just noticed her in the audience and drew attention to her. she seemed a little reluctant to speak in that setting. i believe he asked her when/if she orders IVIG and she stated she had never prescribed it. that she works with abx only. there wasn't more elaboration than that in the presentation. perhaps someone else had a more in-depth conversation with her.

Hi, yes, smartyjones' comment was the one I was referring to in my post. At IOCDF'10, Dr. Leckman started to comment regarding Dr. Murphy's research and then noticed she was in the audience and asked her to comment instead. Her reply was that she focused on antibiotics (i.e., her trials on cephlasporins) and had not used IVIG or PEX/Plasmapheresis. It wasn't exactly that there were different camps, more that different doctors were having success with different approaches.

 

I'm not sure anyone really quite knows what's going on yet (i.e., are we seeing primarily an anti-inflammatory response? Are we seeing a dilution of Tcell activation through by shifting Th2 to Th1 response? Is IVIG blanketing Fc receptors and reactivating Tregs? Does IVIG, Augmentin or Azith have effect on IL6 production and thereby shifting immune response? Who knows.

 

Dr. K was, I thought, very balanced in his comment. But you did have to listen carefully to him. He was highlighting that he generally gets patients by referral after others have tried many things.

 

I so appreciate the coordinators of IOCDF making the multiple views visible. While it was a bit confusing for parents/clinicians since it wasn't yet a unified treatment plan, at the same time isn't it great that they are having success with three different approaches. That is actually more helpful to figuring things out because now one can look at "what do these three different approaches have in common."

 

Buster

[ajcire]

I feel the same way. My son is very mild. He functions just fine. Really at this point it seems you have to be his mother to see it but yes, it's there. I remember reading here how people wouldn't accept that because it's not 100%. From my understanding Dr. K believes that IVIG is the only way.. but there is no way I could justify it for him. He's not even currently on antibiotics. I am fully aware that things can change for us and am most definitely storing up all the information I can take in but at this point, I have to accept 90%.

 

 

 

P Mom - I am totally with you... my son does fairly well between exacerbations... he is happy and functional. I understand that IVIG will not remove exacerabations... so I am having trouble justifying it in our case. I need to talk to the doc more about this. It seems IVIG is really helpful for families who cannot get their kids into remission otherwise... but if you are able to go into remission and be functional without IVIG... is there a point to the treatment? Will IVIG reduce the number of exacerbations he has? That would be a reason to try it... I am still somewhat on the fence in our case.

[KaraM]

:wacko:OK - this is my third attemp at writing about the conference. I got interupted once and screwed up last time. After writing three parapgraphs I lost my post...I think my hand keeps hitting the mouse pad....Anyway, if it showed up somewhere, I apologize for being repetitive...

 

I think the biggest reason I went was to meet many of the wonderful people on this forum who have helped me fight this fight. For me, that was just incredible. Even thought I finalloy got to say a personal thank you, I will stil feel I can't thank people enough!

 

As for the presentations: the researcher track with Dr. C and Dr. Leckman was over my head a lot of the time. I knew it would be walking in... However, one thing that Dr. Leckman said that I don't think anyone has mentioned yet in addition to subsequent infections, "stress" can induce an onset of PANDAS symptoms. Yikes! How many emotions does that bring on...

 

I think all of the doctor's who gave presentations on their diagnostic and treatment protocols were truly just sharing information about their experiences. I didn't get the feeling there were "camps." They asked questions of each other during presentations and discussions. I know some met with each other outside of the presentations as well. They were a very professional group. I think they are all trying to figure this out, too, by learning from each other. I am so grateful for that.

 

I wish I had copies of slides in addition to the limited notes I took. My understanding is that they will eventually be on the OCF website. I hope that's true. I especially feel that way for Dr. K's presentation, because he organized things in such and informative way. But because I was concentrating on listening, I did not take good notes.

 

First, he categorized symptoms into 3 categories: psychiatric, physical and social. He also said that certain symptoms cluster together (at least I think that was him - but maybe it was Leckman). So, for example, OCD is often accompanied by rages and ADHD; tics by eneuresis and something else...(sorry - hopefully you get the picture and the slides become public - or maybe someone else took better notes).

 

Dr. K also established diagnostic criteria. Two absolute criteria (OCD and/or Tics). Major criteria and minor criteria. He will diagnose a child with PANDAS if they have 1 absolute criteria and 2 major criteria or if they have 2 major and 3 minor. (Again, I was counting on the slides so I can't say which symptoms from the well known PANDAS list fall into which categories).

 

As for his comments on treatment. He said he always uses a steroid burst to diagnose. 95% of his patients responded significantly but temporarlily.

 

As for antibiotics, my notes are a bit different from what I've heard others say. I wrote that he thinks antibioitics can be enough "if diagnosed early enough."

Otherwise he feels IVIG is the only long term solution. PEX works if followed by IVIG (except for significan TIC disorcers with minor OCD, then PEX may be preferable).

 

He also said if the IVIG dose is too low, it can make things worse,not better.

 

Another comment that I found interesting was about the average amount of elapsed time and the effect of treatment.He said he doesn't see a difference in treatment results based on duration - so if you child has had PANDAS a long time, s/he can still be treated succesfully. However, he does see a difference by age: not as much success in kids over 10 (but still has some success - so don't lose hope).

 

The parent presentations of their childrens' history were all both heartbreaking and inspring. Thank you for sharing your stories.

 

Laura's presentation on the difference between typical OCD and PANDAS OCD was also very helpful and a different twise on a parent presentation.

 

One other thing I want to add is about a session I went to on how OCD Manifests itself in Families. The doctor/therapist that presented there treats children with OCD. She had OCD as a child, too. She sent me away with some thoughts that I will try to remember when my daughter is in exacerbation. First, she gave us some images and exercises to demonstrate how difficult it is to control our thoughts (don't think about a yellow duck. don't think about a yellow duck in a blue pond....now, think only about a yellow duck for a minute). No matter how hard you try, you can't not think about the duck or you can't think only about it for a minute. For someone with OCD, their thoughts are assaulting them. they can't control it. But we can control out behaviors. That's where the CBT/ERP and habituation come into play.

 

But this was the real kicker. She was trying to get us to understand the level of discomfort they feel when they obsess; why they get irritable; why they can't focus on other things. She told us to imagine that our child was missing for 12 hours. Then she told us our child was missing for 48 hours. Can we think of anything else? Can we get that project done for work? How are we going to respond to someone who asks us where the milk is?

 

O.k...I'm going to hit "add reply" before this post disappears on me.

 

Kara

[Megs_Mom]

 

Then I got a hanky from Buster, so that was kind of like going to a U-2 Concert, and having BonJovi give me a tissue.

 

 

LOL!

 

Thought you would like that!

[Kay]

Thanks Kara,

Lots of good information there.

 

I wondered if Laura might give us some of the information she shared on the OCD

 

Laura's presentation on the difference between typical OCD and PANDAS OCD was also very helpful and a different twise on a parent presentation

 

My daughter continually tells me that it is different and I would like to hear what you have found if that is possible.

 

Also with that being said how does the cbt work if it is based differently, I think this is where we find difficulty.

 

I appreciate you all who went and took notes and are giving updates here, it is wonderful to see all the information.

[Megs_Mom]

......

As for antibiotics, my notes are a bit different from what I've heard others say. I wrote that he thinks antibioitics can be enough "if diagnosed early enough."

Otherwise he feels IVIG is the only long term solution. PEX works if followed by IVIG (except for significan TIC disorcers with minor OCD, then PEX may be preferable).

 

.....

One other thing I want to add is about a session I went to on how OCD Manifests itself in Families. The doctor/therapist that presented there treats children with OCD. She had OCD as a child, too. She sent me away with some thoughts that I will try to remember when my daughter is in exacerbation. First, she gave us some images and exercises to demonstrate how difficult it is to control our thoughts (don't think about a yellow duck. don't think about a yellow duck in a blue pond....now, think only about a yellow duck for a minute). No matter how hard you try, you can't not think about the duck or you can't think only about it for a minute. For someone with OCD, their thoughts are assaulting them. they can't control it. But we can control out behaviors. That's where the CBT/ERP and habituation come into play.

 

But this was the real kicker. She was trying to get us to understand the level of discomfort they feel when they obsess; why they get irritable; why they can't focus on other things. She told us to imagine that our child was missing for 12 hours. Then she told us our child was missing for 48 hours. Can we think of anything else? Can we get that project done for work? How are we going to respond to someone who asks us where the milk is?

 

It was so great to meet you too! Your notes above (I edited to shorten) reflect mine in regards to abx treatment. I agree with other comments about what sample population each doc is seeing as well, but primarily am in the "more research is needed camp" regarding onset trigger, duration of symptoms, immune issues, other comorbid conditions, severity, type of presentation, etc.

 

I'm glad you got some help/perspective from IOCDF sessions on therapy for kids. I adore what I learn there, not in terms of a cure, but in terms of management of exacerbations & help on gaining more improvement after each remission. Some of our kids seem to learn "habits" from the illness.

 

I love that analogy of the kidnapping, in terms of understanding what is happening in their brains, especially before they understand what is happening to them. It gave me chills! I usually feel like "I get" what happens in her brain - but that gave me an even better idea of the worst of times. No wonder she gets panic attacks about the OCD bad thoughts. One of her primary obsessions is that I will "leave her". Her compulsion for this (in an exacerbation) is to keep me in sight - sometimes physically as well - at all times. If I even lean down behind a chair to pick something up, she would begin to scream in terror. Once when I went into a closet to get shoes, she began to scream and could not hear my reply. Before I could get to her, she was out of the house and screaming down the street. Thank God we do not live on a busy street. Imagine that the person that makes it better, that you rely on for everything, vanishing on you during the worst. I would panic too. Finding coping tools so that I could teach her for how to calm the panic and what to do when she felt it, so that she could hear me - well, it was not just nice to have, it was a matter of survival for a while. Then finding a tool (ERP) to help reduce the bad thoughts just a little, allowed us to live - not with joy - but still, survive, through the worst of an exacerbation.

 

Thanks so much for sharing your experience.

[KaraM]

ACtually, this was something that was mentioned in a few sessions, but I haven't seen anyone write about. Unfortunately, it's a bit discouraging.

 

I heard a few times that ERP is really not that effective for children with PANDAS OCD. If anything, it can help with with coping and re-training the brain as your child begins to recover. That is one way that it differs from typical OCD. For some with nonPANDAS OCD, CBT/ERP can work alone. With PANDAS, won't touch it alone.

 

Did anyone else who attended take that away?

 

[

Also with that being said how does the cbt work if it is based differently, I think this is where we find difficulty.

 

[Fixit]

 

But as a parent, it's hard to define success they way they do. I'm shooting for 100% forever. Or at least 100% most of the time and 95% the rest of the time. I think that's where the "grass roots" efforts of parents comes into play. We all know that if we expect mediocrity from our kids, that's what we get. If we expect 100% effort, we're more likely to get that. So we have to keep expecting and asking our doctors to strive for 100%, even if all the unknowns still have to be worked out. That's why there's a "race for the cure". Survivor rates, remission rates go up for those disease where patients refuse to settle for less. But we've got a long way to go.

 

Agreed!

 

Agreed!!

[Fixit]

 

1

As for the presentations: the researcher track with Dr. C and Dr. Leckman was over my head a lot of the time. I knew it would be walking in... However, one thing that Dr. Leckman said that I don't think anyone has mentioned yet in addition to subsequent infections, "stress" can induce an onset of PANDAS symptoms. Yikes! How many emotions does that bring on...

 

 

2

First, he categorized symptoms into 3 categories: psychiatric, physical and social. He also said that certain symptoms cluster together (at least I think that was him - but maybe it was Leckman). So, for example, OCD is often accompanied by rages and ADHD; tics by eneuresis and something else...(sorry - hopefully you get the picture and the slides become public - or maybe someone else took better notes).

 

 

 

3

As for antibiotics, my notes are a bit different from what I've heard others say. I wrote that he thinks antibioitics can be enough "if diagnosed early enough."

Otherwise he feels IVIG is the only long term solution. PEX works if followed by IVIG (except for significan TIC disorcers with minor OCD, then PEX may be preferable).

 

 

4

Another comment that I found interesting was about the average amount of elapsed time and the effect of treatment.He said he doesn't see a difference in treatment results based on duration - so if you child has had PANDAS a long time, s/he can still be treated succesfully. However, he does see a difference by age: not as much success in kids over 10 (but still has some success - so don't lose hope).

 

 

 

1...do you have to treat this stress esasperaton the same as others..abx..ivig??

can a steriod taper bring it down??

 

2..we just started to have a little bed wetting, but waking up...but add vanco...we are have a weird coincidne..more later...does anyone know what the other thing was with tics..

 

3 VERY CURIOS...again maybe my path is being laid out for my......for ticcers....PEX (solely)may be the only thing needed...is that was doc k was suggesting!!!..

 

4...ds is almost 10 1/2..so does that mean he is over 10 or is that like a teeter point?

 

Thank you for the info

and thank you to anyone who can help fill in these blanks!!!

[KaraM]

[1...do you have to treat this stress esasperaton the same as others..abx..ivig??

can a steriod taper bring it down??

 

Dr. Leckman did not say and I did not think to ask. It seems like an obvious question, now.

 

2..we just started to have a little bed wetting, but waking up...but add vanco...we are have a weird coincidne..more later...does anyone know what the other thing was with tics..

 

I'm sorry I don't remember. I emailed the OCF and they are emailing presenters that have not yet given their slides. I will keep checking to see if he sends his in.

 

3 VERY CURIOS...again maybe my path is being laid out for my......for ticcers....PEX (solely)may be the only thing needed...is that was doc k was suggesting!!!..

 

I'm sorry again. But I believe I heard Dr. B. say something similar when we met with him. If I remember correctly, he also believes IVIG is preferable to PEX except for rare, extreme tic cases (can't be positive - probably shouldn't even write it down - but I think it is worth following up with either him or Dr. K if you can).

4...ds is almost 10 1/2..so does that mean he is over 10 or is that like a teeter point?

 

Dr. K definitely said that there is still success with children over 10 - just not as much as with children under 10. So please don't be discouraged.

 

Also, in our appointment with Dr. B, he said he even treats adults that are now discovering they contracted PANDAS as children....so clearly there is hope...

 

Thank you for the info

and thank you to anyone who can help fill in these blanks!!!

[Megs_Mom]

ACtually, this was something that was mentioned in a few sessions, but I haven't seen anyone write about. Unfortunately, it's a bit discouraging.

 

I heard a few times that ERP is really not that effective for children with PANDAS OCD. If anything, it can help with with coping and re-training the brain as your child begins to recover. That is one way that it differs from typical OCD. For some with nonPANDAS OCD, CBT/ERP can work alone. With PANDAS, won't touch it alone.

 

Did anyone else who attended take that away?

 

Also with that being said how does the cbt work if it is based differently, I think this is where we find difficulty.

 

 

I do agree that ERP will not "cure" in isolation - because they have a medical issue underlying it. That does not diminish the value of ERP, nor does it make ERP ineffective. However, any child with severe OCD (whether traditional or PANDAS) can have trouble doing ERP when the anxiety is way too high.

 

We went through a few episodes with nothing to help us but ERP. And it was extremely helpful. At the time, I thought it was getting us a remission. In reality, the PANDAS was ramping down. The ERP was helping us cope and keeping it from building out of control. She really did learn to boss her own brain back. However, it did not keep it from coming back dramatically overnight again - because she has a medical condition. It slammed her out of the blue. Quite clearly, it did not come back as a result of her not working hard enough, as she was extremely motivated, and we were pretty good at the ERP. It came back because she was untreated and had a re-exposure.

 

So I would strongly recommend ERP for dealing with OCD. Having tools to help a child is so important, whether the illness is cancer or OCD or PANDAS or whatever. In our case, the tools are custom made for OCD. There is even a very small study, showing that ERP does help in PANDAS. And the ERP is exactly the same either way - except you may be more likely to have a severe child, who may have more trouble doing the ERP unless you have someone really good helping you. And that unless you get lucky & only have one sudden onset (which certainly could happen), then you will need medical treatment for your child. Having gone through this many times, the ERP is quite easy (or easier) after medical treatment. Abx works for us like an SSRI might for another child. For us, abx has not been 100%, but it's so much better. ERP does not treat a true tic however, or urinary incontinence, or handwriting (unless OCD issues), etc. So the differences are in onset, degree of rapid severity, and other conditions that occur at the same time. ERP did also help for the Panic, Agoraphobia and Seperation Anxiety, all of which were caused by underlying OCD issues.

 

To be frank, ERP was a long road for us - we did tiny baby steps. It is not easy for the child or the parent - but once you are used to it, the payoff is pretty amazing. The confidence that she has that she helped herself does make this worthwhile. We use ERP techniques in a lot of normal life too. But medical treatment is such an important step!

[JAG10]

Meg's Mom,

 

There have been a few parents who really swear by ERP. My dd10 did CBT at U of Penn with Dr. Marty Franklin, he presented at several sessions at the OCD conference last weekend. It didn't work and it wasn't bcs of his skill. I think the difference is if you have a child that has other interfering symptoms like cognitive fog/decline, behavioral regression depending on how it presents, ect. It is very expensive, especially if the dr. has a great reputation.... I would just caution parents to critically question if there child is in a place where they can take advantage of what they are learning. To Marty's credit, he wanted to give it a try, but didn't waste too much of our time of money once he got to know her well enough to see how she was functioning. However, I felt like I learned things that I use for myself.

[Megs_Mom]

Meg's Mom,

 

There have been a few parents who really swear by ERP. My dd10 did CBT at U of Penn with Dr. Marty Franklin, he presented at several sessions at the OCD conference last weekend. It didn't work and it wasn't bcs of his skill. I think the difference is if you have a child that has other interfering symptoms like cognitive fog/decline, behavioral regression depending on how it presents, ect. It is very expensive, especially if the dr. has a great reputation.... I would just caution parents to critically question if there child is in a place where they can take advantage of what they are learning. To Marty's credit, he wanted to give it a try, but didn't waste too much of our time of money once he got to know her well enough to see how she was functioning. However, I felt like I learned things that I use for myself.

 

Good point - I use it for myself too! I should have elaborated more on this comment "However, any child with severe OCD (whether traditional or PANDAS) can have trouble doing ERP when the anxiety is way too high." What I mean by this, is that there are kids that therapists themselves (as in your case) will suggest that the childs anxiety is way to high for them to successfully tackle ERP tasks. Often SSRI's are suggested to help with this (obviously a mixed bag for a PANDAS child). Personally, I lean towards treating the disease early and fast as the best option - and ERP if needed to get back to 100%. Hopefully at that point, you can do much of this at home, using the book "What to do if your brain get's stuck".

 

Every parent has to make a decision about what is best for their family and for their child at any particular time. At the time that we elected ERP alone, we did not have a PANDAS diagnosis - so the only other option was SSRI's. Without the ERP therapy, we were in a completly disfunctional place, both my husband and I were considering who would quit their jobs, we were imagining a future without hope for our child. We all do what we can to survive this, and I'm just suggesting a few tools that may help. Before we tacked the OCD, we actually spent a long time developing tools to deal with the panic. Until we got that under control, there was just no way to do ERP. Whew, as I read this, I am reminded of what a long road this is.

 

Having comorbid conditions can make it REALLY complicated! So to be clear - we did not have brain fog. We also did not have adhd or executive functioning issues. She did have age regression, but this presented in a way that we were able to adjust techniques accordingly. She also had some sort of memory issue, but I think it was OCD related - it's a little hard to explain. This did complicate therapy. We actually did most of our work at home without a therapist, except for an exacerbation where the mental rituals were too much for us to figure out how to do the work.

 

Sounds like you went to a great person, and I am sorry that it was not helpful. Hope things are going well now for your family. It's an evil disease. My dream is that future children get abx immediately, and that this keeps the illness from progressing to the place that we are all discussing and debating on this wonderful forum that feels like family.